Tuesday, March 3, 2009

Today was coo coo. This morning I was told that the bacteria that showed up in Pablo's blood draw from Saturday had grown into strep oralis, which is a natural flora found in the mouth. I was told that it may have even been a contaminate, since everything has been negative since the original culture. It sounded fairly simple. If this was discovered in any of us, we would be sent home and told to brush our teeth a little more diligently, but in a child with ZERO neutrophils, heavy duty antibiotics need to be administered.

Due to Pablo's bottomed-out blood count, he will need to complete 14 days of antibiotics starting with the first negative blood culture, which was Sunday's blood draw. Before we had an exact diagnosis on the bacteria, we were covering bases with two other antibiotics, and now we will be switching to one, ampicillin. I was told that we would get another platelet transfusion tomorrow and be on our way home with a home nurse coming over to meet us and show me how to administer IV antibiotics to Pablo so we can continue to medicate him around the clock for the remaining 11 days. Fine—I'm up for the task...no problem.

At some point when all of this information was coming my way, I just thought, 'What does Dr. Mascarenhas think of all this? Does he know everything that's happening in our little corner of 435W...and would he agree with what the attending, the fellow and the resident are saying?' I sent him a quick little email letting him know that we would like to see him and he said that he would stop by after clinic. On our way to the playroom, we saw Dr. M coming off of the elevator. He acknowledged straight away that Pablo is looking great, but that this is what we always worry about. Pablo had a bacterial infection—this is the risk! I told him that I was under the impression that as far as bacteria goes, this is a better one to have—possibly even a contaminate... "Bullshit," he cut me off. I have to admit, I was taken aback. Dr. M is incredibly gentle, yet firm with his thoughts, comments and game plans involving Pablo. This is the first time that I felt like we were taking something way too lightly. I told him that we were being sent home tomorrow, blah blah blah... "No way!" Fine, We are not interested in taking risks with our son's life—we will stay as long as we need to in order to keep P safe. That said, it still manages to change our mood and energy.

I asked Jeff to stay at the hospital tonight, so that I could be home with Grady and drive him to school in the morning. I even went out and bought fillets to cook for dinner tomorrow night for all of us... just another lesson in everything can get turned upside down in a flash of a moment. Learning how to roll with it has not been so easy for me this time. I'm sad about it. It's been another incredibly rough week on our floor and in the Wilms' Warrior world. Two sweet kids from our floor and three brave soldiers from my Wilms' email group have passed this week. Another beautiful young woman, exactly Grady's age, had to have her leg removed below the knee. That's the reality of what we're living these days.

So, thank you all for listening, caring, praying and continuing to cheer us on. And, please keep the WORLD of pediatric cancer families in your prayers.

I'm so sorry - I know how disappointing it can be when you get your hopes up for even the simplest of things...like a night at home with your family. And we got pretty used to excellent doctors disagreeing amongst themselves. Hang in there Jo Ann. Sending you so much love and hugs. I know it can feel so lonely - know we're here with you.xoxolaura

My friend,please rest tonight.Tomorrow a new day and with it new eyes to see all that surrounds you.Most especially that sweet Pablo of yours.That floor ... I tell you,I just don't have words anymore.IF and I hope it is an if,if you are still there Monday,you and I we will hold each other up.I you when you need it and you me, when for certain I will need it.Peace to you Jo Ann.I might just have to give you a ring tonight.Just to hear your voice and know you are alright.

What a frustrating day! I'm sorry to hear about the change of plans, but it is probably for the best as you know. Emma wound up in ICU because of the same infection...everything turned out just fine, but it was a relief to be in the hospital instead of home that time. We hope Pablo's stay is as short as possible and uneventful! You are all in our prayers.